Heart surgery Archives · Violet Skies

My heart’s all fixed

Back in 2016 I felt the worst pain I have ever felt when I lost my beloved daughter Violet and then the following year I lost her brother Arthur at 22 weeks of pregnancy too. I knew then exactly what people meant when they described a broken heart. I have never felt a pain like it.

Ironically after I had lost Violet in early 2017, before Arthur, I sought medical advice for dizziness and lethargy that I’d had on and off since I had had Violet. When she was alive I was told it was probably because I was sleep deprived with a new baby and being a busy mum but when these symptoms continued after she had gone I got it checked out again. I was diagnosed with having an ASD or hole in my heart that will have been there since birth but possibly enlarged during the pregnancy and birth of Violet.

Heart-frame-the-gallery-wall-violet-skies — I have this gorgeous art work by The Gallery UK in our dining room!

The hole it turned out was pretty large nearly 2cm in diameter and without a repair my symptoms would probably have got worse and I was at higher risk of clots and stroke too. So I have been waiting for a repair since early 2017.

I still remember that first diagnosis of a broken heart and laughing saying “well I know this already as my daughter has just died”.

My broken heart depicted here – Violet Skies

So now it feels odd when I tell people I had a broken heart but now it’s fixed as though it means I am over the grief of using my children. I find myself having to say physically my heart is now repaired but of course emotionally it isn’t.

What’s great is that when I came round from the anesthetic I asked was there a window open as the air felt so fresh, like it does at the seaside or in the country when it’s full of oxygen. Of course there was no window open I just now have the ability to absorb more oxygen from the air so even today when I breathe in the air feels clean and fresh (yes even in Manchester).

I can’t wait to visit the seaside or countryside as I feel it will blow my mind the amount of oxygen I will have.

The other major difference already is that I don’t get out of breath as easily just walking down the road and my muscles don’t burn after even slight exercise either. I felt like the bionic woman initially!

It will take a few months hopefully before I feel the full affects of the operation as one side of my heart is still very enlarged so will take time for the pressure to dissipate but I’m hopeful that by spring I will certainly have a new lease of life.

I will never run a marathon but looking forward to having more energy to spend quality time with my rainbow baby and family alongside of course juggle work, charity and this blog too.

So at a time when lots of people have resolutions about losing weight or stopping smoking I am trying to remain as healthy and stress free as possible in order to give my heart a fighting chance to heal and recover properly.

What are you hopeful for this year?

Do you have resolutions or hopes for the decade ahead?

Please do share with me…

Love Sarah

Always Violet Skies xxx

You might be interested in these posts too –

Broken hearted

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A Literal Broken Heart

January 11, 2020 by intoleranttravelleruk Categories: Broken hearted, Child bereavement, child loss, childloss, Heart surgery, Heartache, Heartbreak, UncategorizedTags: baby loss, babyloss, bhf, british heart foundation, broken heart, Broken hearted, Child bereavement, child loss, childloss, fixed heart, heart, Heart surgery, Heartache, heartbroken, hole in heart Leave a comment

Future planning

Someone asked me recently what my plans were for the next 5 years. I laughed and said ideally I still want to be alive and I hope my family are all still alive too. Then I’d like us all to be healthy and happy. That’s about it.

A 5 year plan?

Not sure that was the answer he was after as he said I meant professionally and for your business. Well it’s not much use wanting anything work wise if I’m not here is it was my answer?

Maybe they shouldn’t ask parents of loss who have a heart defect that will hopefully be repaired before Christmas that question?

I used to be a planner

I used to be into forward planning years ahead at least as far as work, holidays and home went but these last few years have taught me that there’s no point putting too much effort into future plans when something could happen unexpected at any time that can change your world in a heartbeat.

Now I try to live in the present

It much better to live in the present as much as you can and also to try not to dwell too much in the past either as there’s nothing that can be done with that now.

Don’t get me wrong I still plan a little because I have to with work or family plans but i only tend to plan a few months ahead at a time.

How about you? Are you a planner?

Big love

Sarah x

Always Violet Skies

Future-planning-violet-skies — Do you plan ahead? What’s your 5 year plan?

If you enjoyed reading this perhaps you might like to read these articles –

Four years a mother

A Broken heart

Mothering after child loss

November 26, 2019 by intoleranttravelleruk Categories: anxiety, babies, baby loss, Child bereavement, child loss, Control, grief, Heart surgery, Heartache, Heartbreak, motherhood after loss, Mothering after loss, parenthood after loss, parenting after loss, Planning, Sickness, Uncategorized, WishingTags: ASD, baby loss, baby loss survivor, babyloss, broken heart, child loss, child loss survivor, childloss, future planning, Heart surgery, Heartache, parenting after loss, planning Leave a comment

When Mother Nature has other ideas

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For those of you who regularly read my blog or follow me on social media you may know that I have been waiting for the news about my heart since before Christmas (see this blog post if you need a catch up). Anyway that decision was supposed to be discussed with me this week, when I was due to see my cardiologist about my MRI scan results from last year.

Snow

My hospital appointment was on Wednesday, the morning after the night the snow came that caused gridlock across the north west. It meant my cardiologist was one of the many people unable to get into work that day, so, alas again, I am still awaiting news as to what the future holds for my heart and for me.

Frustration

Initially I felt really frustrated that I still don’t know what will happen and all because of a bit of snow! Then I remembered that this isn’t the first time Mother Nature has put a spanner in the works for me and, in the grand scheme of things, this time I feel a bit of snow is quite a minor one.

Other “Mother Nature” surprises

Previous Mother Nature surprises have included nightmares such as my first child Violet being born with a heart disorder that was 100% fixed, thanks to medical science, then only to die from an extremely rare lung disease. Then I am diagnosed with a heart disorder too, that it seems I was born with.

Violet’s butterfly in our garden reflecting the warm lighting from inside the house

My second baby was given the all clear as healthy at his 16 week scan. Then we were told at the 20 week scan that his brain hadn’t formed correctly so we’d need a TFMR. During both of these births medical procedures went wrong and I nearly died. Then I was told the issues both babies had were probably genetic and inherited from me. After tests it turns out the faulty gene is so extremely rare they can’t identify it as yet (of course it bloody is!).

Not all bad surprises

Then Mother Nature pleasantly surprised us with my third pregnancy, which we weren’t expecting as it was immediately after losing Arthur. This time it went smoothly producing the beautiful Aurora. Perhaps she felt she owed me one!

So Mother Nature continually surprises us on a frequent basis so I really don’t know why a bit of snow causing gridlock on the one day I really wanted to be able to see a consultant shocked me at all. I should be getting used to this by now.

Our neighbours snow covered garden so pretty

Ride the Wave

I need to remember to a certain extent to “ride the wave” or “go with the flow”, when forces beyond my control come into play and balls everything up. It really is like the shipwreck analogy of grief. I’ve been clinging to the “I’ll find out about my heart on Wednesday” piece of wood to stay afloat and buoyant for the last month only for it to suddenly disintegrate plunging me under the icy waves once again. Anyway now I’ve clambered onto the “meh so what” Irish whiskey keg barrel and seem to have recovered again!

All I can say is that if a higher power does exist they certainly have a very dark sense of humour with the twists and turns they deliver to me on a regular basis.

I’m just hoping I get to see my cardiologist soon and that he says I can have a keyhole procedure in the not too distant future.

Good job the snow is so pretty. Can you spot the birds?

Hope none of you were adversely affected by the snow and scuppered by our good old Mother Nature. Keep warm.

Big love

Sarah x

Always Violet Skies

You might be interested in the following posts too –

More of a mother – does a natural birth make you more of a mother?

Somewhere after the rainbow – what happens if you lose your rainbow?

Mothering after loss

Guilt when a mother of loss

February 1, 2019June 21, 2019 by intoleranttravelleruk Categories: anxiety, arthur, ASD, babies, baby loss, Baby loss awareness week, Broken hearted, Child bereavement, child loss, Childbirth, children, faith, family, grief, Guilt, Heart surgery, Heartache, Heartbreak, motherhood after loss, nature, parenthood after loss, parenting after loss, rainbow, rainbow baby, Scans, Shipwrecked, snow, tfmr, Uncategorized, Violet, WishingTags: baby, cardiologist, child loss, child loss survival, child loss survivor, Heart surgery, mother nature, motherhood after loss, mri scan, parenting after loss, snow, snowdays Leave a comment

A broken heart

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All I want for Christmas is… keyhole surgery – doesn’t really have that nice a ring to it does it?

For those of you who don’t know I have a broken heart, and no I’m not talking about the metaphorical one I’m always bleating on about after having lost two babies, but my actual physical heart.

My discovery

I discovered it after I had lost Violet and was in the early stages of pregnancy with my first rainbow baby Arthur. I kept having dizzy spells and after my GP diagnosed an inner ear infection months earlier I thought nothing else about it until I saw a private consultant about something else and mentioned it. He said it sounded more like a blood pressure thing and so let’s check your heart. He did and low and behold it seems I have a congenital heart defect an ASD or hole in layman’s terms.

Of course I have a broken heart

I just remember laughing when he told me and said “of course I have a broken heart my daughter just died”. He explained it’s probably been there since birth but I’d just not had the symptoms accurately diagnosed before.

He read all the symptoms to me and they are basically all the symptoms every new mother has. They include lethargy, tiredness, weakness, dizzy spells (which are common for me due to low blood pressure – Olympic athlete level) and breathlessness.

Exhaustion

Even pre-baby I had lots of these all the time but I just assumed I was unfit (even when I attended a gym and had a dog so walked hills regularly) i often felt exhausted but put that down to being lazy & having an insanely mad busy job. Now I see there was clearly an underlining reason I hated PE at school, why I was rubbish at sport and maybe it was instinct that told me to cheat at cross country so I didn’t have to run? Apparently if I’d been an extreme sport enthusiast or a marathon runner I’d have collapsed.

Anyway this week I headed into hospital to have a much needed MRI scan (since the issue was spotted I have been pregnant pretty much ever since 😆 with my two rainbow babies so couldn’t have a scan). They are now deciding how to fix it, as if I don’t it will begin to deteriorate further and then will be unrepairable. So big moment really will it be a keyhole procedure or full open heart rib breaking surgery?

Meh

It’s now dawning on me that this is a huge thing as I’ve always just shrugged it off with a meh what will be will be but now I’m like “oh shit let’s hope it’s not full open heart I need”? Quite like my rib cage as it is.

The black humour part of me says they’re going to fix my broken heart well good luck with that one what are they going to do bring Violet back? I wish! 💜 here’s hoping for good news from the specialist this Christmas.

What are you wishing for this Christmas?

Love Sarah xx

Always Violet Skies

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December 20, 2018June 21, 2019 by intoleranttravelleruk Categories: anxiety, ASD, babies, baby loss, Broken hearted, child loss, children, Christmas, Heart surgery, Heartache, Heartbreak, Uncategorized, What if, Wishing, worryTags: ASD, broken heart, Broken hearted, children, Christmas, christmas wish, family, familylife, Heart surgery, hole in heart, key hole surgery, life, open heart surgery, pr 3 Comments